Who Am I Right Now?: Exploring My Identities #AtoZChallenge

Welcome to day 23 in the #AtoZChallenge. I had a topic for my W post in mind for a few weeks, but then wasn’t sure whether to pick that one. I am doing so anyway. Today, I am exploring the things that make me me. My “identities” can, of course, refer to my alters too, but I covered that topic in my letter M post already. Today, I am exploring my different roles.

I am a daughter. My parents are still both alive. I was a granddaughter (and some would say I still am), though my last living grandparent died in 2018. I am a sister and an aunt-to-be, since my sister is 20 weeks pregnant.

I am a wife. I have been together with my husband nearly 11 years and married over seven. My husband is by far the most important person in my life. Through him, I am also a daughter-in-law and sister-in-law. My mother-in-law is the second most important person currently involved in my life.

I am a blogger. I’ve had one blog or another ever since 2007 and really have been an online writer since 2002. I am also an author, though I’ve had only one small piece published in an anthology. It makes me proud nonetheless.

I am an advocate. Though I don’t engage in as much activism as I used to about ten years ago, I still consider myself a disability, mental health and autistic rights advocate.

I am a believer. Though I subscribe to “something-ism”, it does help me to feel connected to a higher power.

I am mentally ill. I am autistic. I am blind. I am multiply-disabled. I am a benefits claimant. I am a service user at a day center for people with intellectual disabilities.

These last few identities may be the most defining of me when I tend to introduce myself. That’s why I listed them last here. I need to learn to focus on the others.

Quality of Life: Its Impact on Me #AtoZChallenge

Hi and welcome to a late day 17 in the #AtoZChallenge. The letter Q post was what got me to quit the challenge last year, as I kept making up my mind about what I wanted to write about. Same today, until finally my husband suggested quality of life.

Quality of life is a public health concept determining the effects of health conditions or treatments on people’s functioning and wellbeing. It is a commonly-used term in assessing people a long time after an illness or medical treatment happened, to determine if treatment is worthwhile. For instance, in the mental hospital, we were expected to fill out quality of life assessments twice a year to determine if treatment was helping us.

Quality of life is subjective, but it is often tied in with objective measures of functioning. For example, someone who is unemployed is expected to have a lower quality of life than someone who has a job.

I feel very conflicted about the concept of quality of life, as in some cases, it is used to justify euthanasia or withholding of life-saving treatment. This is particularly the case with babies who are born prematurely. Here in the Netherlands, not all babies who can medically be saved, will be, as with those born under 24 weeks gestation, it is deemed that the risk of poor quality of life later on is too high.

I, having been born at the borderline of treatability in 1986 at 26 weeks, have always been concerned with this issue. In this sense, a comment by Dr. Fetter, who coincidentally was my treating neonatologist, in 2004, is striking. He said he sometimes meets former preemies whom he has saved about whom he thinks: What have we done?!” I was at the time 18 and just about to realize that I wasn’t going to be the successful university professor my parents hoped I’d be. I wondered whether I’d be seen as one of these “what have we done?” cases.

I’ve had some debates with my parents about quality of life. When I was in the NICU, my father asked Dr. Fetter what they were doing, setting the conditions so that I may survive? “No,” the doctor said, “we’re just keeping her alive.” He (or his nurse) added that, if my parents disagreed, they’d lose custody of me. My parents were legitimately concerned with my quality of life.

Now that I’m 32 and no longer live with my parents, and having told this story multiple times, I can somewhat distance myself from the feelings that come with this. Before this, I’d often feel that I had to prove I met my parents’ standards of a good enough quality of life or I’d sort of retroactively be left to die. This is, of course, nonsensical.

Kids: Being Childless Sort Of By Choice #AtoZChallenge

Welcome to day 11 in the #AtoZChallenge. For those who followed me on my old blog last year, I chose “children” for the letter C post then. I can’t remember what I did my K post on and am too lazy to look it up, so I’m just taking the opportunity to talk about children again. I hate the word “kids”, but oh well.

You see, I have no kids. At 32, this is a bit abnormal already and it’s becoming more so as I age. The reason I don’t have kids, is complicated. Let me explain.

As a child and teen, I always thought I’d have children as an adult. Even during the time, in my mid to late teens, when I thought I was a lesbian, I thought it would be a given that I’d have children. I didn’t imagine a man in my life, nor did I think of how else I’d conceive, but I always knew I would have kids.

This changed after my major psychiatric crisis when I was 21. For the first year or so, I was busy with merely surviving and getting to see a future for myself other than suicide. Then, my post-traumatic stress symptoms started to emerge.

When I was 27, I made the conscious choice not to try to conceive. I had in the meantime met and married my husband and he agreed. He would even support me if I’d want to get sterilized and said I would most likely have no problem geting the procedure done, given that I’m multiply-disabled. He’s likely right, even though this is extremely ableist.

I know I, personally, couldn’t care for a child. This doesn’t say anything about other people with my combination of disabilities, but it is true in my case. Having made this decision puts me somewhere on the fence between childless and childfree. I am in communities for both on Facebook and find that I’m a little out of place in both. Over the years, I’ve moved more towards the childfree side, as I am realizing I don’t experience my biological clock ticking. Rather, my wish to be a parent is more based on societal expectations. As I once said, I’d want to be a Mommy blogger. Well, I guess that’s not the right reason to try for kids.

Cerebral Palsy: And Other Effects of my Brain Injury #AtoZChallenge

Welcome to day three in the #AtoZChallenge. I am feeling a little off today, as my support worker canceled our appointment tomorrow and my husband will be home from work late this evening. For this reason, I’m feeling a little unmotivated to write. I hope that forcing myself to write today’s A to Z post anyway will help me snap out of the bad mood. Today, I am sharing about a disability that I have had since infancy, but that I didn’t know much about till a few years ago.

Like I mentioned on Monday, my autism diagnosis got taken away in 2016, because my then psychologist thought my having had a brain bleed as a baby precludes an autism diagnosis. It doesn’t, but it did help me gain some new perspective on my issues. Could I possibly be suffering from the effects of neonatal brain injury?

I asked my parents, starting with the obvious. I have left-sided weakness, affecting both my arm and leg, which I assumed was due to the brain bleed. I had heard of cerebral palsy and had figured out I might have this. I asked my father, but he didn’t answer my question. Possibly, he wasn’t told by the doctors, because my mobility impairment is relatively mild.

I did see a rehabilitation physician and had regular physical therapy until I was around eight. I also needed a cast on my left foot because my achilles tendon was at risk of becoming too short. Later, at age fifteen, I was diagnosed with scoliosis. This isn’t so uncommon that it alone warrants another diagnosis. However, coupled with all the other issues, I put two and two together.

Cerebral palsy, for those who don’t know, is basically a mobility impairment due to a brain injury acquired in utero, at birth or in the first year of life.

I finally went to my GP in 2017 to ask him, again focusing on my mobility impairment. This, after all, is the defining characteristic of cerebral palsy. I was just told I had acquired brain injury.

Still, in late 2018, I joined the national CP charity in my country. When I went to their conference in November, all puzzle pieces fell in place. Not only were my symptoms – not just the walking difficulties – characteristic of CP, but I met people with milder walking difficulties than mine who had been diagnosed as having CP.

There are five different levels of CP, depending on gross motor functioning (ability to walk or otherwise move around). People in level 1 and 2 can walk independently, though those in level 2 require some handheld mobility aids for long distances or on uneven ground. I would probably score as level 1 or maybe 2, but this motor functioning assessment is appropriate for children and adolescents only. There are also several different types of CP, depending on which limbs are affected and how. I probably have spastic hemiplegia, meaning CP affects one side of my body only.

Currently, I am not looking for an official CP diagnosis. I probably had one as a child, so digging up my old records may reveal it, but I’m not in a position to do so at this point. I also wonder what benefit I could gain from this. The support groups for CP on Facebook allow me in based on the facts of my brain injury and resulting mobility impairment. Besides, like my GP said in 2017, a physical or occupational therapist treating me for my brain injury would have to take into account the major disability of my blindness. Maybe, should I ever go into long-term care for the blind, I’ll be able to afford support for this.

A diagnosis of cerebral palsy requires mobility impairments, but a brain injury can have other effects. At the CP conference, the first presentation I attended was on overload. The same cognitive and affective difficulties that people who acquire a brain injury later in life can endure, can affect those with neonatal brain injury. In that sense, my psychologist may’ve been correct that my emotional and cognitive impairmetns are due to that.

Five of the Most Significant Events in My Life

And once again, I didn’t post for nearly a week. I am beginning to feel pessimistic that I’ll complete the A to Z Challenge in April. However, I still would very much love to make it happen. I am pretty uninspired though.

To get back into the writing habit, I am choosing to write about a topic I’ve already posted about on my old blogs a couple of times. It is good though for my new readers of this blog to get to know me. I am going to share a list of important events in my life. Because I need to explain a little about each, this post may become a bit long.

1. The day I left the hospital at three months of age. I was born over three months premature and had to spend the first 94 days of my life in hospital. The unit I was on is commonly referred to as neonatal intensivecare unit or NICU for short, though I wasn’t in actual intensive care the whole time. I was on a ventilator for the first six weeks and, after I learned to breathe on my own, was moved to medium care, the general ward and eventually home. In the NICU, I sustained a brain bleed and developed an eye condition called retinopathy of prematurity. These two conditions are the main cause of my disabilities. I was finally discharged from the hospital on September 29, 1986.

2. The day I started special education. I started school, as most children here in the Netherlands did at the time, on my fourth birthday (June 27, 1990). I started in the first year of Kindergarten, which takes two years here. Just before the end of my second year in Kindergarten though, on May 11, 1992, I was moved into special education for the visually impaired.

The reason why I had to transfer remains a mystery. My parents say it was because I had to learn Braille, but I didn’t get to learn that till over a year later and only because a totally blind boy joined my class. The school was generally only equipped to educate those with low vision. Besides, the first special school my parents chose for me, was for those with mobility impairments. I was turned down because cerebral palsy isn’t my primary disability.

My inner five-year-old holds some memories of this situation. In our memory, I was ill with what could’ve been a partly psychosomatic illness just before moving to special ed. I cannot prove this though.

3. The day I started mainstream secondary school. My parents fought for years to get me out of special ed again. If I have to believe them, they fought from the moment I started in special ed to get me out again. They were convinced I’m far too intelligent for special ed, despite the fact that most schools for the blind offer a normal elenentary school curriculum. Anyway, they finally succeeded after taking me to the third ed psych in eighteen months, a psychologist who’d never even seen a blind person in his practice. This was also when I got labeled as gifted with a verbal IQ of 154. These three digits haunt me till this day.

I started mainstream secondary school on August 25, 1999 at my city’s grammar school. Those six years were awful. I scored above-average academically, but struggled socially and emotionally. I dissociated through most of my time there and hardly have any real memory of it.

4. The day I suffered my psychiatric crisis. After graduating high school in 2005, I’d taken two gap years to work on independence. While in my second gap year, I was diagnosed as autistic. Leading up to this was my increasingly falling apart at the independence training home. I got sent out to Nijmegen to live on my own on August 1, 2007 though. I fell apart within three months. By late October, I was wandering everyday, had multiple meltdowns a day and ended up suicidal. I was eventually hospitalized on November 3.

5. The day I got kicked out of the hospital again. I remained in a psychiatric hospital for 9 1/2 years, but eventually got kicked out on May 8, 2017. I believe the real reason is the government budget cuts to mental health, but my treatment team at the time blamed me. I have been living semi-independently ever since. As regular readers know though, I’m in the process of hopefully getting into long-term care again.

PoCoLo

Things I Do at Day Activities

This is my third attempt at writing a blog post for today. I started writing a random ramble, then started sharing ways to relax. While writing about that, I noticed I was explaining all about the snoezelen® room at day activities. I then wanted to write more about things I do at day activities. So here goes.

Usually, I start the day with a cup of coffee. The staff drink coffee in the central area of the day center before the clients arrive, and since I usually arrive early, they offer me a cup too.

Then, when I go to my group’s room, the other clients arrive and the staff help them unzip their coats. They also read the other clients’ diary, in which their home staff write about them.

I usually do a table-based activity first. This involves sorting tasks, construction play, etc. I particularly enjoy shape-sorting activities.

At 9:30, the second staff for the day comes and we drink coffee. Then, we each go to the bathroom. After that, there are set activities for most mornings. On Monday, I go for a long walk with another group. At my group, the other clients play some games and do other table-based activities. They go for a short walk when the other group returns.

On Tuesday, I go swimming every other week. The day center’s people have the pool to themselves then and most clients have an assigned volunteer or staff to help them. The other week, a volunteer comes to our group and we run some errands.

On Wednesday, we have a cooking activity. For this, another volunteer comes. We generally do some really simple cooking. Since it’s a busy day, the staff really do most of the work. I feel sad that they don’t really involve us much. Of course, watching is cool too.

On Friday, we go to the marketplace. Each of us brings some money and we buy something that everyone likes. Sometimes, it’s fish, while other times it’s a bread roll, fruit or salad.

On each of these activities, the staff can’t take all of us. As such, we take turns going with one staff to do the activity, while the rest do table-based activities with the other staff.

Some people also love the snoezelen® or sensory room. I for one do. The sensory room has a water bed, but also a bubble unit, which is a water-filled unit which makes bubbly noises and has floaty objects in it that you can look at. There are also several tactile boards with all kinds of textures on it that you can explore.

Most people also love listening to music. On Wednesday afternoon, a music therapist comes to our group. I only attended this once, as I normally have the afternoon off on Wednesday, but I love it. The group also owns several tablets, a CD player and a TV to listen to music on or watch videos on.

I currently go to day activities two afternoons: Tuesday and Friday. On Tuesday, we have no set activity for the afternoon. This can get a bit boring, as staff usually spent most of the time writing in people’s diaries and doing administrative tasks. On Friday, I and two other clients go horseback riding with one staff.

At 2:30PM, we have a cup of coffee again, After that, most people hang out some and are getting ready for the bus home, even though we won’t be picked up till four o’clock. On Friday though, we have a dance at another group which everyone from the entire center is invited to.

There are four groups at the day center. My group is for the most severely intellectually disabled people. Another is for the elderly. Then there’s one for people with autism and others who need a lot of structure. This is the group who go for the long walk on Monday. The last group is for relatively capable people. They do kitchen-based tasks like loading the dishwasher. They also do creative activities.

Like I said, I’m in the group for severely intellectually disabled people, even though I’m not intellectually disabled. The reason is I need a lot of support and no pressure to achieve. I can visit other groups if I want to though.

#IWSG: Creative Outlets Besides Writing

I have a ton of things I want to write about, but somehow I can’t get myself to actually write. I started trying to use my new Mac Saturday evening. So far, it works but is still a bit hard to use. The WordPress app for Mac isn’t available in the app store, so it is a pain to install. I’m just using my phone now rather than WordPress.com in Safari, because at least I know how to work this.

It’s time again for our Insecure Writer’s Support Group or #IWSG check-in. This month’s question is about creative outlets other than writing.

I must say I”m not terribly creative. I don’t do any artsy things and am no good at music either. No, not all blind people are musically talented! I tried my hand at learning to play the keyboards and guitar for a bit, but didn’t like either. Granted, my guitar lessons were while I was at summer camp in Russia and the instructor spoke Russian and English only. This was before I knew English, so it took me half an hour to figure out what he meant by the “strings”.

If we expand creativity a bit to include crafts, I have tried a ton of them. I started out trying to make cards in 2012, not realizing how inaccessible this craft is to blind people. I should’ve known, since the blindness agency used to offer card making courses but specifically to the partially sighted only.

Then I tried mixed media, which was similarly inaccessible. Then came polymer clay, which should be doable but not by me. I tried to learn to crochet and loom knit too.

Lastly, I tried soap and bath and body product making. I still love that craft and would someday like to pick it up again, but I can’t do it independently. This is when I realized that the problem may not be exclusively with my blindness, but my cerebral palsy affecting my fine motor skills too.

So in short, no, I don’t do any creative things other than write. But I’d love to learn.

Starting My Journey Towards (Hopefully) Going Into Long-Term Care

Last Sunday, my husband asked me whether I had any interesting events this week. I said no, I would just go to day activities and that’s it. Last week, the consultant psychologist on my case called the long-term care funding agency to ask how far they are with processing my application. It’d been sitting with them since Dec 20 and they formally need to finish the process within six to eight weeks. They said it’s on the roll, but that they’d been busy because of the holidays.

Last Thursday, my support coordinator asked whether I wanted to start looking at group homes now while we’re waiting for the funding to hopefully be approved. She had a particular group home in mind which has had an available room for months. I said okay.

She called the group home’s manager and was told I’m welcome to take a tour but to contact the home’s coordinator. Well, to make a long story short, I was invited to the tour yesterday.

This is a home for people with profound intellectual and multiple disabilities. The manager stressed that the current residents all function at a mental age of six months or so. Now I find the whole concept of mental age confusing, probably because I myself function much higher intellectually than emotionally. I mean, obviously I assumed these people can’t talk, but well. I don’t mind.

I drove by paratransit taxi to the home yesterday. It is in a city about 30 minutes from my home. I was told to ring the doorbell if I could find it and else to wait for my support coordinator to arrive. From the need to ring the doorbell, I assumed it’s a locked home. It is. I had already read up on it though and had read that the home has a fenced yard. Otherwise, I wouldn’t have liked a locked place. Like, there’s one my support coordinator has mentioned too in the city my day activities is in too, but that’s on the third floor of a nursing home building. I’d feel like I was in a prison then.

I asked the home’s coordinator why this is a locked home, since I assumed all residents are in wheelchairs. Turns out some can walk and may elope. So do I when in a meltdown.

We started the tour in one of the two living rooms. It had a lovely sensory atmosphere. The coordinator asked, since I arrived shortly past noon, whether I’d had lunch. I hadn’t, so she offered me a slice of bread. I liked that.

Once my support coordinator arrived, we talked about my care needs. I function emotionally at a really low level, which is why my support coordinator had believed this place might be for me. The home’s coordinator understood and liked the opportunity to get to know me.

In the home, you have your own bedroom. You share the bathroom with one other resident. Since most clients use diapers, not all bathrooms have a toilet, but the one adjacent to the available room does. Then there’s a large sensory bathroom with a tub. I loved it. They also have sensory materials to use in the living room or an individual resident’s room.

I didn’t get to tour the yard, but was told there are lots of swings in it, including a cocoon swing like the one I love at day activities. They also have one they can use indoors in the living room.

As for the rules, there are no strict visiting hours. Family are actively involved in the residents’ life. They also have volunteers who go for walks with the residents almost each evening. Sometimes, volunteers cook for the residents. When they don’t, the residents get readymade meals like the ones I got in the mental institution. Once a week, a music therapist comes to the home. It’s a facility which offers treatment, so you get the opportunity for physical, occupational or speech therapy if needed. There’s also an intellectual disability physician and a psychologist involved.

During the night, a staff sleeps in an upstairs room. All residents’ bedrooms are downstairs and there’s no need to go upstairs to find the night staff. Rather, they use technology to listen for suspicious noises in the bedrooms, but the coordinator did say this could be turned off in my bedroom if I were able to phone the night staff myself.

If I get funding for long-term care, it needs to be tweaked somehow if I want to live at this place, because my funding would be based on blindness and this is an intellectual disability facility. Then, the manager, physician, psychologist and all need to agree that I’m the right fit. This includes a risk assessment. The coordinator says this is in case of things like severe epilepsy, but my husband told me to mention elopement.

Of course, I feel internally conflicted as to whether I want this to work out. I’m excited about the facility itself, but still feel like I shouldn’t need this much care. I’m afraid the funding authority is going to agree here.

Once I’d returned home, my support coordinator called me. She had heard from the funding authority physician. The consultant psychologist had already explained my needs, but she wants to see me anyway. That appt is going to be tomorrow at 10AM. I assume this is to validate I in fact have the needs the application says I do. Then, the physician will write a report for the funding decision-maker, I guess.

My support coordinator is going on vacation on Feb 7 and won’t be back till the 25th. She said though that, if my funding gets approved while she’s on vacation and I want to start the process of applying at this living facility, I can do so with the care consultant and my support worker.

PoCoLo

Sorry Not Sorry

Today I am not sorry I suffer with mental health issues. I didn’t choose them, no matter what some people think. I don’t necessarily have a bad attitude – and when I do, it has nothing to do with my mental illnesses.

Today, I”m not sorry I am a trauma survivor. I didn’t choose to endure the traumas I endured. These traumas and the resulting mental health symptoms do not make me weak. They do not make me not resilient. People can be resilient and suffer from mental health issues or trauma-related symptoms nonetheless.

Some people choose to believe that the fact that I don’t live up to my intellectual potential, means I’m not resilient. They reason that, if I were persistent enough, I would have finished university and had a job by now. They also judge my lack of persistence in these areas as a sign of a bad attitude.

Today, I’m not sorry I live with multiple disabilities. I don’t care whether you consider these disabilities valid or not. The people who judge me, think I use my disabilities as an excuse not to fulfill their expectations of me. They don’t realize that it’s my life and I have absolutely zero obligation to fulfill their dreams for me. No, not even when these people are my parents. I have no obligation to prove I am worthy of life.

People who don’t know me well commonly assume I must be very resilient for the mere fact that I’m alive. I didn’t use to like this attitude either, but then I read today’s post by carol anne, which inspired this post. Both of us were born prematurely. Both of us suffer with lifelong disabilities as a result. Both of us endured childhood trauma. Doesn’t the fact that we survived and haven’t succumbed, mean we’re pretty resilient? I think it does. We’re badass!

To Live a Meaningful Life

What does it mean to live a meaningful life? Does it mean to be successful? To contribute to society? I used to think that’s what it meant. I was raised with the idea that, in order to be worthy, you needed to contribute. Many people sitll hold this opinion and it creeps up in my mind every now and again.

Since I’m nowhere near successful by non-disabled standards, does this mean I don’t live a meaningful life? Especially since I used to conform to these non-disableed standards? Until my crisis of 2007, I lived a pretty normal, fulfilling, successful life. Now I seemingly don’t.

I mean, I need considerable care. I’m still not fully convinced that I even contribute to my marriage, even though my husband says I do. I don’t work. I live semi-independently, but this is so hard that I am applying to move into long-term care again. I do day activities at a place for people with severe intellectual disabilities.

Yet if I say this means I don’t live a meaningful life, am I not saying the same of those other people at my day activities place? They don’t contribute to society in any kind of tangible way. Yet they spread kindness and smiles all over the place.

Can’t I redefine meaningful living in a similar way that the National Federation of the Blind wrote a new slogan? They used to say that, with proper training and opportunity, blindness can be reduced to a physical nuisance. They also used to say that the average blind person can do the average job as well as the average sighted person can. This was significantly dismissive of those with multiple disabilities, or those who for any other reason couldn’t contribute as much to society as the average non-disabled person. Now they say you can live the life you want, blindness isn’t what’s holding you back. This is more tuned into the wishes of people to live meaningful lives in such a way that feels good to them. It moves away the focus from the need to contribute and onto the wish to fulfill one’s own dreams. How wonderful!

Linking up with Stream of Consciousness Saturday. The prompt for this week is “Mean(s)”.